Sm. Sawyer et al., REPRODUCTIVE HEALTH IN MALES WITH CYSTIC-FIBROSIS - KNOWLEDGE, ATTITUDES, AND EXPERIENCES OF PATIENTS AND PARENTS, Pediatric pulmonology, 25(4), 1998, pp. 226-230
Males with cystic fibrosis (CF) are generally infertile as a result of
aberrant development of Wolffian duct derivatives. The personal signi
ficance of this and related reproductive and sexual health (RSH) issue
s is unknown. We set out to describe the knowledge, attitudes, and exp
eriences regarding RSH in a group of adolescent and adult males with C
F, as well as the knowledge and attitudes of parents. This descriptive
study was based on a semi-structured interview utilizing in-depth int
erview techniques. Questions included aspects of knowledge, attitudes,
and experiences. Adolescent (aged 14-17 years) and adult (at least 18
years) males attending the Children's Hospital Cystic Fibrosis Clinic
, Boston, MA, USA, or hospitalized at the Children's Hospital over tha
t period were eligible; the accompanying parent of the adolescent was
also interviewed. Consecutive eligible males were interviewed over a 3
month period. Summary data are presented, attitudinal data are analyz
ed qualitatively, and a selection of representative transcript data ar
e reported to describe the range of opinions. Fifty males (10 adolesce
nts, 40 adults) participated; this constituted a consecutive sample of
44% of the eligible clinic population. Ninety percent of adults, 60%
of adolescents, and 50% of parents knew of male infertility. The mean
age (+/-SD) at which adults recalled first hearing this was 16.0 +/- 4
.7 years and 13.9 +/- 1.6 years for those adolescents who knew of infe
rtility. Nineteen (48%) of adults and 5 (83%) of adolescents first hea
rd about infertility from their health care providers. Ninety percent
reported no major distress upon first hearing about infertility during
adolescence. Increasing significance of infertility with maturity was
reported by 12 men (30%); only 4 adults (10%) reported that infertili
ty was not a significant aspect of CF. Forty percent knew that males w
ith CF have a small volume ejaculate, but none had been told this by a
health care provider. Thirty percent of men had semen analysis perfor
med and all were azoospermic. We conclude that the majority of males w
ith CF know of likely infertility. The significance of this knowledge
changes with time. Poor knowledge and confusion surround a range of RS
H issues in males with CF. (C) 1998 Wiley-Liss, Inc.